Participation
Support your child to be involved in typical childhood activities without worrying about being too slow, getting tired or falling over.
Wheeled Mobility
Wheeled mobility refers to either a wheelchair or a powered mobility scooter, which may be manual (pushed by user or carer) or powered (controlled by user or carer) and is used by a young person with weakness to enhance their health, safety, wellbeing and participation in everyday life.
This page will cover when and why wheeled mobility is generally introduced in SMA, the different types that are commonly used, and how to go about obtaining wheeled mobility for your child with SMA.
Wheeled mobility and SMA
Non-sitters and sitters:
Many young people with SMA who don’t walk will spend much of their day in a sitting position. Therefore, they need wheeled mobility options which provide independence and can ensure comfort, maximise physical ability and manage energy levels throughout the day.
Wheeled mobility is prescribed by allied health therapists, usually physio or occupational therapists, to make sure your child has the ideal support for their body. Technology and adaptations can be added to the chair as your child grows, and expresses new interests and lifestyle needs.
Walkers:
Young people with SMA who walk independently will get tired more quickly and fall more often than their peers.
Increased weakness, fatigue and falling (or the fear of falling) may become more obvious over time and young people with SMA may opt-out of daily activities to keep themselves safe.
Wheeled mobility is used by those with SMA who walk to varying degrees for rest and safe access to all aspects of life. This may include busy spaces which require lots of walking: school excursions, shopping centres, day-outings or just when very tired at the end of the day.
In general:
Wheeled mobility enables young people with SMA to keep up with their friends, stay safe, manage fatigue, be independent and fully participate in kinder/school, community and family life ensuring social, physical and emotional well-being despite increasing muscle weakness.
Frequently Asked Questions (FAQs)
Mobility
Give your child the confidence to move easily from place to place.
For example: safely keeping up with peers when moving between classes, going out into the school yard or supermarket shopping.
Access
Freedom to go anywhere your child needs to throughout their day.
This will be individually planned for each family and child- according to their lifestyle.
Energy conservation
Using wheels and chair technology to conserve your child’s energy so they can enjoy the best aspects of their childhood.
For example: Whether using the chair to rest whilst moving from one place to another, or changing the chair position (to recline, tilt or lay flat)
Ability
A customised seat can support a young person’s body to help them get the most out of the muscle strength they have.
For example: support around the back and chest can help arm muscles to achieve more during daily activities such as dressing or writing.
Growth
Provide appropriate support while sitting to encourage good posture and healthy growth.
For example: to prevent muscle and joint tightness and keep a straight spine.
Comfort
For those who mostly sit, wheelchair features allow your child to stay comfortable throughout the whole day.
For example: using a wheelchair to change body-position, such as tilting the chair back or lifting the leg rests.
Adjustable
Choose equipment that can be modified and grow with your child.
For example: with time a young person’s body shape, size and level of weakness will change. Where possible, wheeled mobility devices should change too.
Manual wheelchair
A manual wheelchair may be provided early for occasional use. It is usually pushed by a parent/carer or the user and may fold for easy transport. It is more suitable than a stroller or pusher for school age children.
For example: excursions, visiting busy environments like the hospital, or trips to the city.
Stroller
Specialised strollers or prams with individually designed seating support are typically only prescribed for infants and toddlers.
Younger children, around pre-school age may continue use a specialised stroller for a short while when it’s preferred by families. Beyond this however, it is more age-appropriate to discuss other options such as a small wheelchair.
It is worth noting that a stroller does not provide independence required by most school age children with SMA and is unlikely to be recommended by allied health therapists beyond school age.
Powered wheelchair
Powered wheelchairs are used for children with SMA who spend most of their day in a sitting position. A child can be assessed by an allied health therapist for the potential to manage a powered wheelchair from pre-school age.
A power wheelchair has a comfortable and supportive seat to provide postural support, conserve energy and allow your child to independently participate in everyday life alongside their peers.
Standing power wheelchairs are another power wheelchair option enabling sitting or standing in the wheelchair itself. There are some benefits to using a standing power chair however your child needs to be assessed to make sure it is appropriate for them. Talk to your local physiotherapist or occupational therapist about this.
Power wheelchairs are generally large, heavy and cannot be easily dismantled to fit into a car boot. Your family will require some form of modified vehicle/van or access to maxi-taxis to transport your child in their power chair.
Powered mobility scooter
May be provided to walkers when physical tiredness is limiting their safety and participation. A scooter allows your child to get from place to place, saving energy. Most powered mobility scooters can be dismantled and put into the back of a larger car, for example a station wagon or SUV.
Your child must be able get on and off the scooter on their own and, as it is a powered form of mobility, it is important that your child is trained to use a scooter safely in the community.
Discuss this with your local occupational therapist or physiotherapist if you have questions.
Discussions around wheeled mobility can be both challenging and confronting but your allied health therapists can support you in this.
It is useful to consider wheeled mobility close to your child’s time of diagnosis. Your allied health therapists will help you to become familiar and comfortable with how wheeled mobility best fits into your family unit, your child’s needs, and their lifestyle.
Be sure to reach out to your occupational therapist or physiotherapist to discuss this further.
Your allied health team, which may include both community and hospital physio and/or occupational therapists, will work together and with you and your child to decide which wheeled mobility product is right for you.
In Australia, the National Disability Insurance Scheme (NDIS) provides funding for wheeled mobility. Your NDIS-funded community allied health therapists (physio and occupational therapists) are responsible for prescribing the equipment along with writing the application to NDIS and can also support the ongoing maintenance of the equipment itself.
If you do not have access to the NDIS or do not have enough funds in your package to begin working with an allied health therapist toward wheeled mobility, you should contact your healthcare team or speak to your NDIS planner for more information.
Once you have an NDIS plan, the usual process for acquiring wheeled mobility is:
1. Therapy team
Make an appointment with an occupational therapist (OT) or a physiotherapist in your area to discuss equipment prescription.
2. Set goals
Meet with your allied health therapist to set goals for wheeled mobility use. These may include your child’s interests, lifestyle, environment, priorities, challenges and physical needs.
3. Trial equipment
Spend time trialing different equipment to ensure they are comfortable, functional and achieve your goals.
4. Confirm funding
Your therapist will write a script detailing your equipment and submit it to your funding body for approval (in Australia, this is usually NDIS).
5. Training program
Once the equipment has been received it is important that funds are also allocated for allied health therapy to build your child’s skills and confidence in using the new equipment.
6. Review ongoing
Stay in touch with an allied health therapist to review and modify the equipment as your child’s needs and goals change.
If your child is not eligible for NDIS, talk with your physio or occupational therapist about alternative funding arrangements.
Some useful prompts to consider when thinking about whether your child would benefit from wheeled mobility include:
Tiredness or fatigue:
Observing how your child’s life is being impacted by tiredness or fatigue may indicate that it is time to consider introducing wheeled mobility.
Tiredness can look different for each child and so it can be useful to begin to understand how it looks for your child. For example, when tired they may: have difficulty focussing, behavioural challenges, falls, disengage, opt out of activities, ask to be picked up early from school etc.
Falls
If your child is falling more often, it may be due to increasing weakness. They may feel unsafe and start to opt out of typical activities due to trouble keeping up with peers or frequent falls. This could be another indicator that wheeled mobility would be beneficial to conserve energy, reduce tiredness and prevent falls.
Participation and access
If your child is starting to miss out or opt-out of typical childhood activities for their age-group it may be time to consider whether wheeled mobility may be helpful. Discuss this with your allied health therapists.
Mobility
If you and your healthcare team notice that your child finds it more difficult to walk longer distances, it might be time to explore how wheeled mobility can help.
Family life
This is about how your child is managing to keep up with all aspects of family, community and social life. For example, is there anything you avoid doing together as a family or that your child can’t be involved in because of limited mobility? If so, it may be time to consider wheeled mobility.
Suggestion from healthcare team
Your doctor or therapist may suggest wheeled mobility if their assessment of your child shows walking is becoming more difficult.
If you do not yet have a community-based physio or occupational therapist talk to your hospital-based team on where to start.
If your child has a regular community physio or occupational therapist, start by talking to them about wheeled mobility. If they can’t help you, they may be able to help you to find someone suitable to assist with equipment prescription. If the physio or occupational therapist helping you doesn’t have a good understanding of SMA and the progressive nature of this disease, you can seek specialist information from your primary neuromuscular team. Most importantly, you and your child must feel comfortable with the physio or occupational therapist you engage with to prescribe the equipment.
Reach out to your community allied health therapists and encourage them to work with your primary neuromuscular healthcare team to apply for a review of this decision or to plan your next step.
Work with your community allied health team to trouble shoot issues you are experiencing with your current wheeled mobility. They will help you decide your next move.
If you do not have a community team, reach out to your neuromuscular healthcare team at the hospital.
